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At just four months old, when unexplained bruising led to an urgent hospital visit, Jordan was diagnosed with infantile acute lymphoblastic leukemia. After completing two years of standard treatments and a bone marrow transplant, it was determined that Jordan needed an alternative option. Her parents made the decision to travel from their home in Canada to the United States with the hope that CAR T-cell therapy would be the treatment that worked. Today, Jordan is healthy and happily attending school!

In her own words, Jordan’s mother Tammy shares the story of her daughter’s diagnosis, relapses, and the journey to CAR T-cell therapy.

In February 2014, our daughter Jordan developed bruising and was sent to the hospital by our family physician for immediate bloodwork and, hopefully, some answers. She was transported that night to Sick Kids Hospital in Toronto, ON, Canada and later diagnosed with Infantile Acute Lymphoblastic Leukemia (ALL) with MLL rearrangement.

Jordan was only 4 months old and her twin brothers, Noah and Jacob, were only 3 years old. Our whole world turned upside down as we began our fight for Jordan’s future. The better part of the next 7 months was spent in the hospital for Jordan’s chemotherapy treatment while our little family was often separated.

Jordan completed a tough 2 years of the Infant ALL protocol Interfant 06, but just 3 short weeks after completing treatment she relapsed. She had developed what seemed like the flu but her bloodwork confirmed her leukemia was back and we were heartbroken. After discussions with our primary oncologist, it was determined that her next treatment would be a bone marrow transplant. CAR T-cell therapy was talked about as a possible option but it was felt that BMT was more proven.

Jordan was only 2 1/2 years old, and there was uncertainty that her young, chemo-exposed T-cells would even grow once they were re-engineered. Her T-cells were harvested anyways and sent to New Jersey in the hope that they would indeed grow — and they did!!

CAR-T was now a viable option if she needed it after a second relapse. In July 2016, after more intense chemotherapy, full body radiation, and a terrifying ICU stay, her 5-year-old brother Jacob gave his marrow to her in an attempt to save his little sister’s life. It did not work and in under 6 months after BMT Jordan began having knee and ankle pain that would wake her from her sleep. Jordan’s leukemia had returned again and a second relapse meant Jordan would need a trial only available in the US.

The Children’s Hospital of Philadelphia (CHOP) had CAR-T trials open and the FDA was very close to giving approval for the use of Kymriah for pediatric ALL. My husband and I left our boys at home in Canada with my mom and then moved with Jordan to Philadelphia for 7 weeks in the summer of 2017. She was only 3 1/2 years old and we told Jordan that her own “soldier cells” would work hard to get rid of her leukemia.

Jordan received exceptional care from our team at CHOP but, after the chemo and CAR-T infusion, she was unwell for a few weeks. Thankfully, she bounced back quickly and couldn’t wait to get home to Canada. We were fortunate enough to have my parents and our boys visit while we were in Philadelphia, and to also go visit friends in Washington, DC while Jordan recovered.

At one month post CAR-T infusion, Jordan was once again in remission and we went home to our family in Canada. We didn’t ever dare dream that she might one day get to go to school but 2 months later, in September 2017, our little fighter started Junior Kindergarten!!!

Sadly, Jordan’s B-cells were slowly returning so her team recommended she get a re-infusion of her CAR-T cells at 6 months post infusion. This meant another round of lymphodepleting chemo, and this time Jordan got really sick. We thought she was just getting a fever from the CRS reaction, but instead Jordan was fighting ParaInfluenza 1 and PJP Pneumomia at the same time. She was very sick and deteriorated so quickly that she was soon in the ICU in a medically induced coma on rapidly escalating ventilators. We truly thought that after everything … we might lose her.

Her team was simply amazing and Jordan fought so hard to get better that despite missing Christmas that year, she finally returned home in January of 2018.

Since then, Jordan has recovered and steadily improved. She now celebrates over six years in remission! Today, Jordan is a funny and energetic 11-year-old who enjoys playing Minecraft, making arts and crafts projects and listening to Taylor Swift. When Jordan grows up, she aspires to be a hairstylist. She is wise beyond her years, stubborn as can be and the light of our lives.

We are eternally grateful for every single day that we have with her and for all the wonderful people that worked so hard to keep her with us.

 

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